On February 8th a European Parliament event took place, hosted by Member of Parliament (MEP) Frédérique Ries and organised in collaboration with EURORDIS. The event was in the framework of Brussels Rare Disease Week 2023, to reflect on how the EU can ensure that more and better treatments are available, accessible and affordable for people…
REGISTRATION IS OPEN – EARLY BIRD DEADLINE JANUARY 31 Lack of understanding and poor management of pain severely impacts the quality of life of children and adults with OI. Under the title “Balancing life with OI” we are organising a topical meeting on the neglected subject of the causes, assessment and management of pain in…
From November 8-9 Ingunn and Renata attended the EURORDIS Council of Federations meeting in Paris. Inger-Margrethe S. Paulsen from NFOI also attended. Among the topics were access to treatments and the pharmaceutical legislation, information about Rare Disease Week and future funding options in research. There was also an update on the situation for people with…
The umbrella association Osteogenesis Imperfecta Federation Europe (OIFE) is together with members from our Medical Advisory Board invite you to register for the very first virtual European Investigator Meeting for osteogenesis imperfecta (OI), which we hope will become an annual tradition. The event will take place on Zoom November 18th 2022, 2 PM – 7…
On December 6th three representatives from OIFE took part in the first edition of the Rare Bone Disease (RBD) Summit: Oliver Semler Ingunn Westerheim Inger-Margrethe Stavdal Paulsen On December 14th we will attend the second half of the two half-day multi-stakeholder meeting. The RBD (Rare Bone Disease) Summit is a global multi-stakeholder group meeting that aims to provide a platform…
SAVE THE DATE – 1st VIRTUAL OIFE INVESTIGATOR MEETING November 18th 2022, Online The umbrella association Osteogenesis Imperfecta Federation Europe (OIFE) is together with members from the Medical Advisory Board of OIFE inviting you to save the date for the very first European Investigator Meeting for osteogenesis imperfecta (OI). This virtual one day meeting will…
On September 4th the Brittle Bone Society had their annual conference online. OIFE was represented by Ingunn Westerheim, who gave a talk together with Dr Laura Tosi and Tracy Hart from the Osteogenesis Imperfecta Foundation on how we can fill the many knowledge gaps we have in OI. The talk tried to explain how people…
Summary by Ingunn Westerheim, Dr Oliver Semler and Dr Lars Folkestad The OIF investigator Meeting is normally held in Chicago, but took place online on April 15th 2021. OIF Investigator Meeting The program chair this year was Dr Deborah Krakow who is Professor and Chair of the Department of Obstetrics and Gynecology at UCLA. This…
